Monthly Archives: November 2015

A Year of Thanks

This year has been hard, y’all. HARD. Sometimes I think that my Mom’s death took a scoop of my soul along with her. And then just over six months later, my husband (my caregiver, my best friend, my everything) had … Continue reading

Posted in Occupying | Tagged , , , , , | 8 Comments

Add Your Voice to the Call to Investigate PACE

(reprinted with permission) Twelve U.S. ME/CFS organizations have called on the Centers for Disease Control and Prevention (CDC) and Agency for Health Research & Quality (AHRQ) calling on them to investigate the PACE trial concerns outlined by David Tuller and … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , | 2 Comments

A Request That Should Not Be Ignored

Six scientists have sent a joint letter to the Editor of The Lancet asking for an independent re-analysis of the PACE trial data. The letter, published today on Virology Blog, is signed by Dr. Ron Davis (Stanford), Dr. Jonathan Edwards … Continue reading

Posted in Commentary, Research | Tagged , , , , , , , , | 13 Comments

Someone Had To Say It

A long story about this moment in ME/CFS research and advocacy by journalist Virginia Gewin was published in Mosaic, a publication of the Wellcome Trust today. The article includes a great profile of Dr. Lenny Jason, coverage of the PACE … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , | 11 Comments

FDA Progress on Measuring Outcomes

I have an update on the progress of the ME/CFS Outcomes Measures Working Group working with FDA. As I reported in March 2015, the FDA helped convene a Working Group comprised of representatives from FDA, NIH, CDC, and academia in … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , | 16 Comments

The NIH Plan

(updated November 9, 2015) Unless you have been avoiding the internet for the last week, you already know that NIH has made a big announcement regarding its plans for ME/CFS research. Dr. Francis Collins has made some remarkable and welcome … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , | 23 Comments